When I started writing this blog almost five years ago, I never thought anybody would read it. Apart from Pádraig’s friends who wanted to know how he was getting on in Hamburg. So I wrote about what happened. I wrote how I felt. I wrote about people that crossed my way. Our way. There were few things I did not write about. And when I did not it was because I did not want to.
That has changed. I have become much more conscious, because I have been told on several occasions, that I have to respect the privacy of others, even, and especially, if they are professionals. I have been told not to rock any boats too much because that could make things difficult.
I don’t like writing with scissors in my head.
Yet, it seems that there are things that need to be said that cannot be said because they would do damage if they were to be said. Sounds complicated? It is. At least for me. When sharing my personal perspective on what is going on should be simple. Because that is what I do. I share my perspective. Not the truth.
Pádraig continues to do well. In physio this morning, he was on a floor matt lying on his back with his knees up in the air, pushing his pelvis really high up towards the ceiling. The thing is, and I will get back to this one day, that it is becoming clearer to me every day that while therapy is necessary, integration and participation and love shown and received is the key. After that, everything else falls into its place. – What do you think?
Yes, I definitely agree that if shown all those elements, together with patience and compassion, we can achieve so much.
Hi Patrick, you’re one of the less than few young men whom I admire immensely for your never wavering courage and determination.
God bless you Patrick, but I believe he already has.
What a very nice thing to say. Patrick was so proud to hear this!
Ana Teresa Santos Beck said:
you are very rigth!!!
Integration and participation allow people to see and understand and ask how can we make this better. Listening to your observations on what you see and experience allows us to understand better the frustrations of the system. You can compare two systems in Germany and Ireland and we can all see and ask why is the Irish system not as good as the German system. The more people ask the more the will to change will grow.
Part of the German system is that you have rights as a ‘service user’. The system recognises that it will never be perfect and that there will always be aspects or parts of it that won’t deliver. Which is why there are courts who will help you to assert your rights – which are pretty transparent. In Ireland, you look after yourself and never rock the boat. If you manage to get onto Primetime, your problem will be solved the next day. If you ask what seems to be a very simple, general question – like: do homeware packages cover therapies, as it says on the Department of Health website, but as is denied by the HSE – you will simply not get an answer. It’s truly mysterious. Or: really outrageous.
Watching the Primetime programme last night what rights did those service users have to have the company and companionship of their family, and why did the HSE not ensure these rights of these service users were considered. Everyone needs an advocate and if you cannot speak for yourself as a service user then …. You as the advocate have been told not to rock the boat because things will become difficult….
Very scary stuff
The system, when challenged, circles the wagons. Then, it is not deficient care that poses a risk to the service user, it is the person pointing out the deficiencies who poses a risk to staff. All this at a time, when HIQA, the health inspection quality authority, found, according to The Irish Times, “major ‘non-compliance’ with regulations”, not for the first, but for the sixth time. https://www.irishtimes.com/news/social-affairs/third-of-staff-at-dublin-disability-centre-had-no-garda-vetting-1.3675450
HIQA’s report is available for download here: https://www.hiqa.ie/areas-we-work/find-a-centre/cherry-orchard-hospital
It is scary and, in my view, inhumane, against basic human rights, and a prison-like environment that they are allowed to create.
At the same time, the legal situation in Ireland still is that families have no legal say in the care of their loved-ones. It’s the HSE who decides – despite the 2015 Assisted Decision Making Act – which has still not been implemented.